Author: Sylvia Eng

Many of the board members of Rare Disease Foundation play critical roles in advocacy whether it be in improved patient care, increased awareness, networking and bringing together the medical and patient communities for valuable dialogue, raising questions and seeking answers to provide efficiencies, hope and cures. Thank you to all of our board members and…

The Rare Disease Foundation is thrilled to announce her Excellency the Right Honourable Julie Payette, Governor General of Canada has honoured its organization with viceregal patronage. It is her Excellency’s goal to be a patron to groups that make exceptional contributions to Canadian society and the Rare Disease Foundation is such an organization. Executive Director…

Today marked an important day for the Montreal and its surrounding area Rare Disease Community. As a new political party takes office, the Coalition Avenire Quebec (la CAQ), several groups of like-minded individuals joined forces to have their voices heard. Major cut backs to orphan drug support policies and social services have been felt by…

ANNOUNCEMENT The Rare Disease Foundation is very excited to announce that Ms. Alyson Doughty is joining our team as Fund Development and Program Officer, effective October 25, 2018. Alyson is English/French bilingual and has both for-profit and not-for-profit experience as a business owner, employee, and volunteer. Her international training and experience in public affairs, fundraising, and relationship…

A new study focusing on the common experience of parents of children with Rare Disease has recently been released. The authors of the study, Jennifer Baumbusch, Samara Mayer and & Isabel Sloan-Yip looked at parents experiences before diagnosis as well as during care to assess current gaps in healthcare as well as support impacting these families. “Despite the…

Please join me in congratulating Juan Flechas on a very successful first IronMan race, and also on his recent engagement as well!! He dedicated his race to his brother who lived with rare disease and raised funds and awareness for our foundation in honor of him. He has chosen to put the dollars raised towards…

Regina!!! Peer 2 Peer meetups are now available in your city. Volunteer Ross McCreery is the leader for this group, with a tentative start date for the end of September 2018. Another exciting thing about this group is that this will be our first group that has a focus on adults living with rare disease….